Random Quotes

"Owning our story can be hard but not nearly as difficult as spending our lives running from it. Only when we are brave enough to explore the darkness will we discover the infinite power of our light."

I realize I haven't posted here in a very long time. I thought I'd give an update from this years annual checkup.

There is a "spot" on Asher's spine. That is all I was told at the annual clinic with Asher there, and Scott wasn't there. So, after leaving, Asher asked, "Can this spot turn into cancer?!" I then realized I asked NO questions. I scheduled an appointment to see the oncologist to ask my questions!!

Here are the answers / information:

(1) The spot is around 2mm
(2) It has actually been there since February 2011, tiny, and much more obvious in November 2011, and doesn't 'appear' to have changed, although it is 'brightest' on the January 2015 scan. The oncologist went back and looked at scans to find its beginning (after I requested this one-on-one meeting) - no radiologist took note of it until this year.
(3) Oncologist has no idea what it is
- (a) it 'could' be calcium deposit
- (b) it could be a blood vessel, he says, but it is only in three or four frames of the vertical scan so I don't agree, and it looks nothing like the other ones higher up
- (c) it isn't Meningioma since he didn't have radiation
- (d) he doesn't think it is cancer since it isn't more nodular and it would be faster growing
- (e) he cannot say that it won't turn into cancer (I did not tell Asher this, since this was the only question Asher)
(4) MRI with contrast is best to see it, which is what we did
- (a) cannot do PET scan or Spectroscopy as it is too small
- (b) doesn't want to do a spinal tap because he believes it won't find anything and why bother putting him through anesthesia
- (c) doesn't want to do a biopsy as it might damage nerves
- (d) doesn't want surgery (which at this point would be the only way to find out what it is, and even then the surgeon might not see it)
(5) since it 'appears' that it has not changed since last year, staying on 12 month MRI schedule is ordered
(6) symptoms of growth would be associated nerve pain in back at L1 and L2 and appropriate radiating pain
(7) what else....no one is concerned....cept me....I'm his mother

I have told Asher it is not cancer.

I find it almost ironic that the last post-treatment blog post I made, 4 years post, was the one where this spot should have been noticed / noted / discussed.

Asher is 8 years out of treatment!! He is in 6th grade at a middle school. He has an IEP and has Math resource which replaces social studies. (They want to take that math resource away....the issue I have with it is that he isn't getting help for his current math, it is math taught in its own level, for all the kids in it (from what I understand). Asher says he does homework too, but I don't understand when. I do want him to have that help.) He struggles with reading and language arts, and organization, and keeping up, and responsibility....and gets grades around C's....he never does homework at home and I have no idea what is going on. He says he does it in resource (I think). It has been a struggle. I wish I saw him working at home....writing and reading. He just wants video games. He is so smart at math and logic and building and computers. At school they built a tower out of spaghetti and he won! (Suppose he may take after me, the structural engineer in the family....and a lover of architecture (there is a famous American architect named Asher Benjamin, and I knew that when I named him lol).) He takes PE for his specials class and the other is computer generated and offered music the first half of the year and this half he is in some computer class that he says they do typing. He is a moody child. Very very moody. Hardly ever happy or smiling. Very unlike the way I remember him when he was young. I suppose this is puberty. I miss him holding my hand or hugging me or telling me he loves me. But, I know he does inside himself.

As for me, a mom of a brain tumor survivor, I am doing pretty well. I am still a stay-at-home-mom. I can't imagine trying to have a job again. It seems every week, I get at least one kid that needs to stay home sick, and/or I get a call from school that I have to pick a kid up. I did start a hobby, though. I breed cats. Exotic shorthair, exotic longhair, and Persian cats. Boy does it allow me to nurture babies again. Kittens are amazing. And, I make people happy with their new life-long companion. I still see my psychologist, yes. She is my crutch. She is trying to get me to be less dependent on her and be stronger emotionally, on my own. But I still see her 3-4 times a month. I'm selfish and want to see her. I also still don't handle stress very well. She would say I don't have enough support people in place, but I actually do. I have a lot of friends (mostly online - Facebook). But, some stuff I 'can't' talk to them about. I still take medication and I might for the rest of my life. I've had depression pretty much my whole life, and it was just the traumas/triggers in my life that would put me into a really bad place. The medication helps. I still struggle with the MRIs and going to the hospital and clinics. A few years ago I choked on chicken at Wendy's right before going to clinic. I was okay, but had to go by ambulance to the hospital and have a scope done to remove it. Poor Asher....his dad was in town, thankfully, and picked him up at Wendy's and onto clinic they went. My anxiety gets so strong. Even this year, like the previous, I sit in the cafeteria at the hospital during the MRI scan and have a good cry. At least I'm not in the bathroom puking, like I did a year or so before even that. The PTSD is strong at the hospital. Even now just typing this, and thinking about that, brings tears to my eyes. Am I worried about this spot? Yes. How much will it affect my daily life? I don't know.

To steal photos of my "sick" Asher and claim them as your own sick child, is just wrong, ....!!!! If you are the person(s) who has done this, or is doing this still, .... well, I hope you are caught!

I've done my best, this morning, to remove 99% of the photos on this blog. I will not assist anyone in their attempt to defraud people by sharing photos from when Asher had cancer. I may bring the photos back at a later time, if I have time to "watermark" all of them, but as you can imagine, that would take a lot of time. At this point, I don't think the photos are necessary to still share Asher's story and help give hope to other families going through this heartbreaking journey called childhood cancer, although, I do think they helped. Helped to show everyone that children (and families) are tough and still have joy during their battle with cancer!

For those that are giving souls, take a step back, slow down, before you give.

I hold all those who gave us gifts, gift cards, phone calls, money, .. in my heart forever! I never asked for money. It was the love and prayers I asked for.

I was going to let today go un-mentioned, but I changed my mind. This will be good for me to journal, and do it publicly. Most of you know about my son't brain tumor, his cancer treatment, and that he is well. But many of you might not know the significance of today. That today is the five year anniversary of finding his brain tumor. Five years ago, today, Scott took 3 year old Asher to the hospital while I stayed home with 2 year old Alexa and 6 day old Aubree. We both got phone calls, after 5pm, while we were separated, before the MRI was even finished, from the pediatrician, telling us about the mass. This day, in the big picture, the "five years" is very small, because time can't be measured, not when you live day to day after something like cancer. But, 5 years is what they told us...."Your son has 80% chance to live 5 years," they said. (Later it was changed to "50% chance or less", and "more like 7 years," as if statistics matter. There wasn't enough kids his age doing the treatment he was going to do to even know anyway....and every kid reacts to treatment differently....) FIVE YEARS. Last year I made a card thanking the pediatrician for the 4 extra years she gave me with my son. That's what these years are to me, EXTRA!!!! It is like I don't or didn't deserve them and they were taken away the moment I heard, "Your son has a mass growing in the back of his brain."

Not only is today the 5 year anniversary of finding Asher-B's brain tumor, but today is the one-year anniversary of me seeing a therapist. It was something I finally had to do, and sure wish I had done 5 years ago, instead of only 1 year ago. I saw one on 5/26, but she was kind of far from my house, and then I got approved as a new patient to one closer to my house and started seeing her a month later. To think, my therapist was 15 minutes down the road from me all this time and I didn't know it. I'm still battling depression; my doctors tell me it is because my "chemicals are messed up." I'm still trying different meds. Some days I feel like giving up on the meds because I just don't feel different, and sometimes think I am way worse!! With the support of my therapist, I find it easier to live with less emotion. This is a good thing, for me. The anger is less (actually almost gone entirely). I do still have some irritability (that's the depression). I'm able to love easier, hug more, and take on more tasks. I'm still not finding enjoyment, though, and that's the depression. I had made many of my "feelings" posts private last year when I started therapy, but I have decided it is time to bring some of them back to the public. I have no shame in my emotional journey, and I share it with you. It is also time I take a look back over this past year to see how I have grown.

And, to the doctors, surgeons, and nurses, that saved my Asher-B's life, and gave me these five extra years, thank you! I wish I could thank each and every one of you personally!

Asher's MRI last month, on February 21, was clear. We were at brain tumor clinic the following day, where not a lot happened. Asher did walk toe to heel, toe to heel, with his hands in his pockets (just because he didn't pull them out of his pockets after being asked to walk the straight line), with almost no visible wobble. His balance is remarkable. The only thing unsettling, Asher doesn't return for another MRI for 12 months. A whole year. Annual MRIs now. Am I ready? I'm not sure. I guess time will tell. When he went from every four months to every six months, at around three months is when I started to worry more. I told my psychologist that three months is usually my comfort time, the relief period of hearing he had a clear MRI and I don't have to worry.... Thank you to those who still check on Asher. It means more than words can express.

It is pre-MRI preparation. I start talking to Asher about his upcoming MRI about two weeks before the scheduled time. It is scheduled for February 21st. This following conversation took place Tuesday night, while tucking him into bed.

me: "Your MRI is in two weeks. On a Monday when you don't have school. Its a holiday. Daddy doesn't have to go to work either. Do you know why we do the MRI?"

Asher: While wiggling his fingers by his left temple, "To make sure there are no balls in my head."

me: "Yes, tumors. We are making sure no tumors are growing, in your brain, and your spine. They will scan your spine too," I said while rubbing a few fingers along his spine.

Asher: "Why?"

me: "Because the fluid in your brain travels down to your spine, and we need to make sure there aren't any tumors there, too. If your back ever hurts, you need to tell me."

Asher: "My back hurts."

me: "Like hurts and never goes away, or hurts and gets worse each day."

Asher: "Oh." (long pause) While touching the back of his head, at his scar, "Why did they cut back here, cut my head, when I was awake?"

me: "They never cut your head while you were awake."

Asher: "Yes they did."

me: "No, they put you to sleep just like you go to sleep for your MRIs."

Asher: "Yes they did. It really hurt."

me: "I wonder if you are remembering when you had the open wound and they were changing the dressing back there."

Asher: "They did cut back there while I was awake; I was holding a toy and looking this way and it hurt."

me: "That was when a child life person came in and gave you a toy to try to distract you. I wonder if you are remembering when they took the tape off your head. The very first time they did it, you were awake, but sedated with medicine, which didn't work very well. You were crying and holding my hands. I was there with you to make sure you were okay."

Asher: "They did cut my head when I was awake. Were you there to see it?"

me: "No, I couldn't go in with you for surgeries."

Asher: "Why not?"

me: "Because I am not a doctor or a nurse?"

Asher: "Why couldn't you go in and see the surgery."

me: "Like I said, because I am not a doctor or nurse."

Asher: "Well, they hurt my arm, right here," he said while pointing to his arm near his elbow. "And it was all bloody and it really hurt."

me: "Wow. (pause) Sounds like you remember having your Picc Line in your arm. You got an infection in the central line that was in your chest," I said as I touched him over his heart. "And you had to have a new one put in, in your arm. Before you started the last three months of chemo, they took the one in your arm out and put one in your chest," I said as I touched over his sternum. (bit of a pause) "OK, it is time to go to sleep now. Say your prayers. I love you. See you in the morning," I said as I kissed his forehead. I left him, in his dad's bed. (He still sleeps with his dad. When he started 2nd grade in August, I had him sleeping in his own bed. But, it didn't last but a few weeks.)

Asher: "Good night mom," he yelled to me after I was already downstairs.

me: Yelling loudly, "Good night Asher."

Downstairs I was in a bit of shock over his memories. He even seemed a bit upset while talking, as if he really remembers the pain. Wednesday afternoon I talked to my psychologist about Asher's and my conversation. I told her I hadn't looked at pictures in a very long time and I don't think Asher has seen any. His memories seemed real. Can he really remember? She asked me how old he was then. She said it is possible, that he remembers. Then I had a sudden thought. I wondered if that is why Asher wants the IV in his foot for MRIs instead of in his arm.

We have been blessed with another year with Asher. He's grown physically, normally. He has remained healthy and not needed any antibiotics or doctor visits for illness. He can coast on a scooter and keep his balance. He is still trying to learn how to ride a bike without training wheels. He is reading better (but has trouble with story re-telling). He's good at math. He continues to be good at video games. He has friends. He is still shy. He tells me, his mama, that he loves me, and hugs me. He tests me, whining like a toddler, to get his way, but does not win. He's a normal kid, with a not-so-normal past.

Sometimes you hear, "Everything happens for a reason."

Sometimes you hear, "You will be happier if you are more grateful."

Sometimes you hear, "Don't fear or worry about things you can not control."

But, rarely do you hear the emotional truth, from a parent of a child who has/had cancer.

The emotional truth is that I am still searching for the reason, or trying to figure out how to live without one.

The emotional truth is that I thought I was plenty grateful. Somewhere, somehow the emotional trauma caught up with me, and no amount of thankfulness has repaired my pain.

The emotional truth is that I feel afraid and I worry.

A friend shared this blog article with me. My friend said, "It is written by an 'autism mom,' but I thought you could possibly relate." I read it and sobbed. Absolutely sobbed. There are no words that will express how I feel when I realize I am not alone.

When I last posted that I needed a break from this blog, I had started weekly therapy with a psychologist (July 1, 2010). By mid-August, after Asher's last MRI and clinic, I was much worse. She said I was in clinical depression and needed to seek help from a psychiatrist. So, I did, in early October. The med (Lexapro) the psychiatrist recommended, and prescribed, and I took, made me worse. By late November I chose to stop taking Lexapro (after my psychiatrist was unreachable (he went out of town for 6 weeks)). Under the advisement of my therapist, I voluntarily went into a mental health hospital in December to withdraw from Lexapro and get on new medications (Wellbutrin SR and Seroquel). I was there 12 days. Now I'm back to weekly therapy with my psychologist, and back to my psychiatrist bi-weekly. (Updated 3/3/11: Seroquel wasn't helping me and it was disturbing my sleep. My psychiatrist gave me Symbyax and instantly I noticed a change in my sleep and I even felt really good the first week I started it. Not so sure right now how the mediations are working for me, but just wanted to update here.)

Asher is doing well and I need to keep his new healthy life separate from the past sick life.

He currently has MRIs every 6 months, so not often, but I will post scan results under "TREATMENT" (clickable along the top of this frame around the text).

I've gone through and made most of my "feelings" posts from the last two years private so I can read them, if needed, in the future, but I do not want to read them anymore.

The blog will remain up, as a way to reach out to those that may be interested in Head Start clinical trial for a three year old (or those under 6 that do not receive radiation). I am available if you have any questions; just sign the guestbook and I can email you back. I've done this for several people who have emailed me.

I have found, coming to my own blog, to blog, has become emotionally disastrous for myself....the pictures, the memories....all of it....

I wish I could wish away the memories....the pain....

Found a new doctor, really near my house and her internist is amazing....connected with her right away yesterday....

It is unrealistic to answer What do you want to accomplish in therapy? with, "I want to not remember that time in my life...." Even more, unrealistic, to say, "I wish this wasn't my life."

I thought about this yesterday, after therapy with my new doctor/internist team (and I think I found two wonderful women to work with), that I simply can not answer, honestly, that question What do you want to accomplish in therapy?.

I want to not feel like I'm in a dark hole.
I want to clean the house and not feel like it is too much for me.
I want the memories to not hurt me so deep in my throat and shoulders and chest.
I want to not feel pain when I look at the back of my son's head.
I want to not feel all this anger.
I want to not feel afraid to accept another sunrise because something bad might happen.
I want to be able to read a book about a sick little boy and not have it make me swell up with tears.
I want to be able to go pick my kids up from school, and not look at all the kids there and wonder who will get cancer and who will die.
I want to not feel this fog....this murkiness around me....
I want to clear my head.
I want to play and run and ride a bike, and play games, and teach my kids all the things I have inside me to teach.

I found it really hard to answer another question Who is your support system? I actually, paused, thought, paused, and then said back to her, "What do you mean by that?"

When asked if I took medication, I answered, "Yes, but I stopped F E E L I N G." Then I was asked, something like, How long did you stuff your feelings with this medicine?

I was trying to think back, wondering if she really asked me this, in this way, because I thought could she really understand what I was saying?!

I have been struggling, deeply, about admitting that I pray....if that makes sense at all....this struggle with prayer, and life and death, etc., has been going on most of my life....there is a lot of loss, illness, death in my mind and heart, and it is a struggle. And, I do not believe, as two people have said to me in the last two months, that my pain and heartache are due to the devil. I believe it is because my mind is just wired a bit different and I need help to find much better coping mechanisms. I believe I just didn't get a chance to cry, grieve, process all that went on when Asher was ill, and unfortunately, I don't think I can when I am taking care of four children, four pets, a house and yard....

BUT, with that said, I believe my loved ones on the other side have shown me the way to this doctor....I'm feeling positive, through my tears this morning, that THIS IS IT. They ARE going to help me. I am going to be able to deal with the overwhelming emotions much better. I'm going to take back control of my emotions and life.

At the end of gathering my info, the doctor and internist sat down with me and said they want to do EMDR (eye movement desensitization and reprocessing) therapy with me for PTSD (post-traumatic stress), saying I was a perfect candidate....we start this week, unfortunately she won't see me on Saturdays, but that was too much to hope for. I hope it "works," but I know if it doesn't, something else will, it is just a matter of time.

I'm Trying to remember how the psychologist explained this to me....let me see if I can type in words what she told me about EMDR.

When the trauma event occurred (when Asher was diagnosed with cancer), my body went into survival mode, trapping "pictures" of memories in the right side of my brain (the emotional side). So, now when memories come up, I go into emotional over drive, and can't process facts or thoughts without emotions. What EMDR does, or hopes to do, is move those pictures over to the "fact side," the left side of the brain.

I hope I explained that correctly.

The doctor says, the hope is, that I can take a phone call to schedule clinic without crying, some day, but today, it didn't go so well. I couldn't stop apologizing to Annie for crying only a minute or so into our conversation....

(Edited to add: I won't be working with the internist, though, I'll be working with only the psychologist, starting July 1st. After the first visit with me, the internist asked the doctor to take me as a client because her husband was currently in treatment for brain cancer (currently doing the radiation part of his treatment)!)

One area I remember her saying was hard for him was a shopping list....he was supposed to remember a shopping list, and then even cluster the items in the list into categories (i.e. food, clothes, etc). Then after the first shopping list, he had to remember another one....yeah, that didn't go well.... She said that is a sign that he needs to learn math, take a break, work on reading, take a break, and separate each subject like that in order to process.

Memory even looked good, however, a test that has him look at faces and then asks which faces he remembers seeing was very difficult for him. I asked her if it could be due to vision problems (as she said a similar test that had dots was not as challenging as the faces).

She did notice testing anxiety.

She did not see attention problems.

She noticed he is still shy, but he has matured and had no problem having a different gal in the room performing the tests, even when she left.

She highly recommends I do a 504 plan....even just to address his loss of vision.

Next testing is in two years, I think, and she said she only tests ages 2-5 (she did Asher's as a favor and because she wanted to see how he was doing, she said), so we will be with a different doctor next time.

We should have the full report by the beginning of the school year, early August.

Got an email update from an online friend whose son had a brain tumor, same kind as Asher's, and in 2006 as well....they recently went to MRI and clinic and she shared this with me:

"They also talked to us as the caregivers about how now is the time that the reality of it all begins to settle in and you begin dealing with your own emotions, etc. I have found that to be very true for myself. It's sorta like being on a crazy roller coaster ride - the ride comes to a stop, but you are left sitting in the front row sorta in shock. You watch others zipping along, but your life just doesn't quite "zip" the way it used to anymore. Sorta hard to put into words .......... "

I wish I was alone, in this, meaning no other mommy had to feel what I have been feeling lately, but I know there are so many. Her email to me tonight, this little piece of knowing that I'm not alone, and I'm normal, means a lot to me.

I made a thank you card for my kids’ pediatrician last week. Three of my kids had their 2010 well checkups. I wanted to tell the doctor thank you for saving my son’s life.

I’m not sure I was doing it for her; I needed to thank someone.

I FELT LIKE I WAS NEVER THANKFUL ENOUGH.

Today I feel like I am not thankful enough.

My son is ALIVE and THRIVING. He is amazing and beautiful and growing and learning and doing so wonderful.

I’m not thankful ENOUGH for this....

I’m in tears....

I feel like I need to give up my life.... Like OK, he survived, now take me....

I never made a deal with God, not that I remember, but the way I feel now, it is sort of like I did, subconsciously.

Anyway....

So, I made a paper-bag card. Front was a picture of Asher from the week of diagnosis, May 2006, and inside a picture from now, May 2010. Then a photo from each year in between were on sheets you could slide out of the inside of the bag. Inside, next to the picture from May 2010, I thanked the doctor for being the very first doctor in our lives to save my son. I thanked her for ordering the urgent MRI after only one 45 minute sick checkup. I thanked her for giving me these extra years with Asher-B. I told her there really is nothing in words that can express what I truly feel in my heart (because there aren't).

I gave it to the gal at the front desk, asked her to put it on the doctor's desk (I didn't want to disrupt our well-checkups with emotion), and as the kids were getting weighed, she came out and gave me a hug and said, "You're going to make me cry at work." And then she said, "I went to 1000 years of school for that one day."

And, when he lost his hair in chemo, I came to LOVE THAT BALD HEAD OF HIS.

But after a year or two, after treatment was over, it became difficult to look at any photo of Asher bald. The big website one, at the top left here, isn't too bad as he has a hat on, but even Asher says, "I look weird" when he sees that picture (I'm sure because no eyelashes or eyebrows).

Last year, after kindergarten was out, I thought I would like his hair being short, so I buzzed it off right when school ended.

Then his left eye started drifting inward, and I had that major scare that his cancer was back....

But it wasn't.

But after his hair grew again, in first grade, I kept the top much longer for him. He liked it that way. A few weeks ago I left it even longer, as he always wanted to comb his hair straight down and close to his eyebrows. So, I actually thought this was my best haircut for him.

Well, today I buzzed off my baby's hair, with a #2 clipper. His hair is naturally curly and just looks ratty in the back after he lays on it, leans on it, sits in his car seat, etc. I was going to keep the top longer but then it was just easier to shave it all. Then I took pictures. He has those same gorgeous blue eyes that Asher and Aubree have. He looks much more blonde with less hair. His head is round. And, he's almost three. And, looking at his picture today reminded me of sick Asher. Not Asher. Sick Asher. Asher has the same chin as the girls, from my genes. Andrew's face is so much like his daddy (comparing age wise), so in that way, he doesn't look that much like Asher to me, but the hair....

The hair....

"I want a summer haircut, too" Asher says tonight after brushing his teeth. "Just like Andrew's." "Oh, you don't want it longer like this? I thought you liked this longer?" "No, I want it shaved off." "OK, well, maybe I can buzz it off with a #7 then, so it isn't too short and your scar doesn't show as much." "No, I want it just like Andrew's, I like my scar" he says. "Okay, I'll do that after the two birthday parties you have to go to on Saturday and after your two neuropsych test days next week then." "OK," he said.

Sigh....

I guess I'm just going to have to deal with this short hair issue and what it does to my mental craziness.

Speaking of mental craziness, I had a therapy session on May 26th. The first one as an adult (I'm almost 37), on the 4th anniversary of Asher's cancer diagnosis (I actually didn't pick the date, I noticed it after the lady scheduled it for me). It was an extremely emotional 40 minutes. The lady was very nice, however, she is just too far for me to drive. I see I need to go more, and maybe for months, and probably include my husband, so I'm going to find someone closer. I'm in the process of this....as well as the social worker that works with the oncology team is guiding me a bit.... I also bought, from Amazon, a book: "Writing For Emotional Balance: A Guided Journal To Help You Manage Overwhelming Emotions." It should be delivered tomorrow. I can't wait to journal and work with this guide.

....Patients with cancer of the bladder who were treated with HAMLET (Human Alpha-lactalbumin Made LEthal to Tumour cells), excreted dead cancer cells in their urine after each treatment, which has given rise to hopes that it can be developed into medication for cancer care in the future....